Developing patient-centred care: an ethnographic study of patient perceptions and influence on quality improvement.

BACKGROUND: Understanding quality improvement from a patient perspective is important for delivering patient-centred care. Yet the ways patients define quality improvement remains unexplored with patients often excluded from improvement work. We examine how patients construct ideas of 'quality improvement' when collaborating with healthcare professionals in improvement work, and how they use these understandings when attempting to improve the quality of their local services. METHODS: We used in-depth interviews with 23 'patient participants' (patients involved in quality improvement work) and observations in several sites in London as part of a four-year ethnographic study of patient and public involvement (PPI) activities run by Collaborations for Leadership in Applied Health Research and Care for Northwest London. We took an iterative, thematic and discursive analytical approach. RESULTS: When patient participants tried to influence quality improvement or discussed different dimensions of quality improvement their accounts and actions frequently started with talk about improvement as dependent on collective action (e.g. multidisciplinary healthcare professionals and the public), but usually quickly shifted away from that towards a neoliberal discourse emphasising the role of individual patients. Neoliberal ideals about individual responsibility were taken up in their accounts moving them away from the idea of state and healthcare providers being held accountable for upholding patients' rights to quality care, and towards the idea of citizens needing to work on self-improvement. Participants portrayed themselves as governed by self-discipline and personal effort in their PPI work, and in doing so provided examples of how neoliberal appeals for self-regulation and self-determination also permeated their own identity positions. CONCLUSIONS: When including patient voices in measuring and defining 'quality', governments and public health practitioners should be aware of how neoliberal rationalities at the heart of policy and services may discourage consumers from claiming rights to quality care by contributing to public unwillingness to challenge the status quo in service provision. If the democratic potential of patient and public involvement initiatives is to be realised, it will be crucial to help citizens to engage critically with how neoliberal rationalities can undermine their abilities to demand quality care

Effects of community participation on improving uptake of skilled care for maternal and newborn health: a systematic review.

BACKGROUND: Despite a broad consensus that communities should be actively involved in improving their own health, evidence for the effect of community participation on specific health outcomes is limited. We examine the effectiveness of community participation interventions in maternal and newborn health, asking: did participation improve outcomes? We also look at how the impact of community participation has been assessed, particularly through randomised controlled trials, and make recommendations for future research. We highlight the importance of qualitative investigation, suggesting key areas for qualitative data reporting alongside quantitative work. METHODS AND FINDINGS: Systematic review of published and 'grey' literature from 1990. We searched 11 databases, and followed up secondary references. Main outcome measures were the use of skilled care before/during/after birth and maternal/newborn mortality/morbidity. We included qualitative and quantitative studies from any country, and used a community participation theoretical framework to analyse the data. We found 10 interventions. Community participation had largely positive impacts on maternal/newborn health as part of a package of interventions, although not necessarily on uptake of skilled care. Interventions improving mortality or use of skilled care raised awareness, encouraged dialogue and involved communities in designing solutions-but so did those showing no effect. DISCUSSION: There are few high-quality, quantitative studies. We also lack information about why participation interventions do/do not succeed - an area of obvious interest for programme designers. Qualitative investigation can help fill this information gap and should be at the heart of future quantitative research examining participation interventions - in maternal/newborn health, and more widely. This review illustrates the need for qualitative investigation alongside RCTs and other quantitative studies to understand complex interventions in context, describe predicted and unforeseen impacts, assess potential for generalisability, and capture the less easily measurable social/political effects of encouraging participation

Spaces for Citizen Involvement in Healthcare: An Ethnographic Study.

This ethnographic study examines how participatory spaces and citizenship are co-constituted in participatory healthcare improvement efforts. We propose a theoretical framework for participatory citizenship in which acts of citizenship in healthcare are understood in terms of the spaces they are in. Participatory spaces consist of material, temporal and social dimensions that constrain citizens' actions. Participants draw on external resources to try to make participatory spaces more productive and collaborative, to connect and expand them. We identify three classes of tactics they use to do this: 'plotting', 'transient combination' and 'interconnecting'. All tactics help participants assemble to a greater or lesser extent a less fragmented participatory landscape with more potential for positive impact on healthcare. Participants' acts of citizenship both shape and are shaped by participatory spaces. To understand participatory citizenship, we should take spatiality into account, and track the ongoing spatial negotiations and productions through which people can improve healthcare

Does the evidence support global promotion of the calendar-based Standard Days Method® of contraception?

OBJECTIVES: To scrutinise claims about the effectiveness of the Standard Days Method® (SDM). The SDM is a calendar method with similarities to the rhythm method that has now been reclassified and is marketed as a modern contraceptive method. As promoted, it requires users to avoid unprotected intercourse on days 8-19 of the menstrual cycle. It is used in at least 100 countries. SDM has been researched, developed, and is marketed by the Institute of Reproductive Health (IRH) at Georgetown University, USA, and a for-profit company Cycle Technologies. SDM proponents say it is a major advance on traditional periodic abstinence, claiming that it is 95% effective when used correctly - rivalling pills and condoms. The effectiveness claim is repeated in recent documents from the World Health Organization. STUDY DESIGN: Evaluation of evidence obtained via literature review of published and unpublished reports. RESULTS: Claims made for SDM effectiveness appear to rely on a single efficacy study where "correct use" of SDM was defined as total abstinence from intercourse in cycle days 8-19. It may therefore be misleading to apply a 95% effectiveness figure from the study to SDM as promoted, where abstinence is not required. Moreover, "typical use" effectiveness figures, cited as 88%, are based on an unrepresentative sample of women using SDM in ways likely to vary from how SDM is used in practice. CONCLUSION: Existing evidence does not support claims that the effectiveness of SDM as promoted is comparable to the best short-acting modern contraceptive methods. SDM is promoted in ways that may mislead users, by quoting overestimates of effectiveness and providing efficacy comparisons only with selected methods of contraception. Users should be provided with full and accurate information to make contraceptive choices. IMPLICATIONS: Use, delivery and promotion of SDM should be reevaluated. Meanwhile, SDM should only be offered to family planning clients as an adaptation of traditional periodic abstinence methods, requiring total abstinence in fertile days - reflecting "correct use" in the efficacy study - to achieve high effectiveness. Delivery of any form of SDM should include presentation of the full range of other contraceptive methods, including the most effective options

Correction to: Improving implementation of health promotion interventions for maternal and newborn health.

Following publication of the original article [1], it was noted that the formatting of the authors' manes was inconsistent with that of the other articles in the series

Experience as Evidence: The Dialogic Construction of Health Professional Knowledge through Patient Involvement

This article investigates how healthcare professionals articulate the relationship between patient experience and ‘evidence’, creating hybrid forms of knowledge. We propose a Bakhtinian dialogical framework to theorise this process. Drawing on ethnographic work from patient involvement initiatives in England, we show how patient experiences are re-articulated by professionals who add their own intentions and accents in a dialogical process which incorporates diverse forms of knowledge and the conflicting demands of healthcare services. In this process, patient experiences become useful epistemic commodities, helping professionals to respond to workplace pressures by abstracting experiences from patients’ biographies, instrumentalising experiences and privileging ‘disembodied’ forms of involvement. Understanding knowledge as relational and hybrid helps move beyond the assumption that there is a clear dichotomy between ‘objective science’ and ‘subjective experience’. This article illuminates how new knowledge is produced when professionals engage with ‘lay’ patient knowledge, and helps inform the sociology of knowledge production more widely. </jats:p

'Slow co-production’ for deeper patient involvement in health care

"Slow co-production", achieved by involving patients in in-depth research, can help deepen patient involvement in health care. In this case study, the authors describe how slow co-production offers a specific and mutually beneficial form of patient and public involvement and engagement